Barry's Story

My husband Barry spent much of 2014 with chronic back pain and over a period of months he lost weight, was extremely lethargic and had constant severe bowel issues.

Fortunately in mid December our alert GP started a rapid investigation of a small growth noticed in a scan when he was trying to follow up on the bowel obstructions. Within a few days Barry was under the care of a specialist who fortunately was alert to the possibility of RPF.

Retroperitoneal fibrosis (RPF) is the abnormal growth of white and 'woody' tissue on and around the structures of the abdomen that are outside the peritoneum. Occasionally, the tissue can be cancerous.

RPF is also known as Ormond’s disease. RPF is a rare condition that develops in about one in 200,000 people. While it can affect anyone at any age, those at highest risk are men aged between 40 and 60 years, for reasons that are not clear.

In the next few months Barry endured many tests, an emergency double ureter kidney stents, two robotic operations to ‘remove’ some of the growth constricting the ureters and apply omental wrapping to prevent further damage. As well as a result of the mass and kidney failing he developed a massive Deep Vein Thrombosis in his groin and left calf and thigh. He is still on blood thinners.

The use of prednisolone is the current medication to shrink the growth. The side effects from that medication is being constantly monitored with regular blood tests. Five months later he is slowly gaining weight, the stents are removed and things look to be improving.

There is no cure; the fibrous growth is so thick, hard and entwined in vein and arteries that it cannot be surgically removed. Ongoing life blood tests and scans will be the current care plan. It's all an unknown journey for doctor, patient and carer!

Karin Watts - Wife

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About Rare Voices Australia

Rare Voices Australia (RVA) is a national, not-for-profit organisation established in 2012 with a vision to be ‘the unified voice for ALL Australians living with a rare disease’.
RVA is Australia’s national alliance advocating for those who live with a rare disease.
RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases.